Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

November 2016

Throughout November and December, life was difficult because I was so depressed even though my sisters came for a visit on New Year’s Day. I finally got off of Tikosyn and back on Cordarone. I had to buy it from Turkey because the U.S. doesn’t produce brand name anymore. Don’t worry… I had the approval of my cardiologist, that I’ve seen for about 25 years, to take the Turkey Cordarone. So he knows me pretty well. Now that I’m back on Cordarone, I’ve started feeling more myself, as in my heart has settled down. However, I went through a month of feeling as if I had no motivation and all the Christmas stress was getting me depressed. K was noticing. It was definitely a struggle there for a while. I even stopped crocheting for about a week and a half. *SHOCK!* Whaaaat??? Say it isn’t so! I know, I’m surprised about it too. But don’t worry. I’m back at it and I finished the December Need a Hug afghan and have started January’s afghan! Yay! I still need to get the December afghan in the mail. Ergg… Sorry!

Because my breathing has been worse, I exchanged my 5 liter oxygen concentrator for a 10 liter concentrator that I use with my liquid oxygen. I still use a splitter that I can connect the two (concentrator with the liquid oxygen) to use together to make my liquid oxygen last longer. There’s another reason for upgrading to a 10 liter concentrator. I need a machine that will give me more oxygen for when I need it in the future. Plus, it will make vacations a lot easier because we will only have to travel with one 100lb liquid oxygen reservoir and one 75lb reservoir as well as the 10 liter concentrator. I’m thinking ahead for my future. You may be wondering why I still use my concentrator with the liquid oxygen bled in together. Well, the oxygen concentrator does not put out 100% pure oxygen like the liquid oxygen does. My lungs are very sensitive and they just need a higher concentrated level of oxygen. Plus, using 6L of oxygen from both 100lb reservoirs using the splitter (each on 3 liters) doesn’t last me a whole week. My O2 guy only comes once a week for a refill. I tried just the oxygen concentrator at 6LPM but everyday I slowly started feeling worn out. It’s as if I’d use liquid oxygen on 5L… I could do it but by the end of the day my body would feel weak and my breathing would be much more difficult. Here’s a picture of my splitter.

O2 spltter

O2 spltter

But now for the good news… K and I are planning to go to two concerts!! U2 and Roger Waters! K has been waiting for what seems like forever for U2 to announce a concert date in our area. The really neat thing that’s kicked me out of depression is that K has finally decided to help me do a MAJOR Spring cleaning. It’s not the type of Spring cleaning that you may be thinking of, but it’s more of the kind where you take all the stuff out of every closet and my craft room. We are sifting through all of it and deciding what to throw away, what to donate and what to shred. I have TONS of paper work to shred. We had to get an extra paper shredder so that K could help. The one I already have is slower and shreds less paper at a time. K is parting with his McFarlane action figures and he has a LOT of NHL series 1 thru 12 plus variants. (We are looking for a place to sell them. Most likely below cost.) We’re talking boxes and boxes of dolls. Oops! Did I just say dolls? I mean action figures. *wink* It’s good to get the house uncluttered. It makes me feel like I’m accomplishing something. I work on it everyday and even though it makes me feel exhausted, I don’t want to stop until my house is just the way I want it. Finally!

I plan on blogging more often. So keep coming back! Thanks for reading and stay well. *hugs*

Gearing up for the PH International Conference and What’s up with my heart?

Living On Oxygen for Life

I’m super excited to be going to the PH International Conference in Dallas this month. Hooray! I’ll be surrounded by so many people who have the same disease that I have. I hate to even call it a “disease” but that’s what Pulmonary Hypertension is. It’s a disease that has no cure but it’s slowing amassing some amazing medicines to help battle the symptoms that PH causes. We still need a cure. The conference is going to be a way for me to learn even more about PH. I want to actually try to find other people to have Pulmonary Hypertension who also has Scoliosis like I do. My PH is secondary to Scoliosis and Restrictive Lung Disease due to Scoliosis deforming my rib cage. Finding others like me will be difficult. Not many people out there like this. PH is a rare disease. I want to find those people and compare how they manage life with how I manage life and breathing. Maybe we could learn something from each other. *fingers crossed*

Before I go to this conference, I have to get through the next 9 days of the 10-day Halter Monitor I’m wearing to get a read on what my heart is doing. Tikosyn is not really helping my heart arrhythmias which is discouraging. The doctors didn’t believe me so I “suggested” that they do a Halter monitor to see what’s going on. We’ll find out one way or the other. Right? Like I said, *fingers crossed*

I’m actually impressed with the newer halter monitor that I’m wearing. It’s cool! I get a “Sensor” that has 3 leads and I wear it around my neck from an attached lanyard. Plus, there is the “Monitor” which is like a cellphone. When I have an “episode” with my heart skipping, I get to push a button on the screen of the monitor and go through a few questions about: What is happening? (I check: Heart skipping), What’s your activity? (I click either resting, mild, moderate, or heavy). So far, I’ve not had to click on heavy activity. I’m not crazy! haha! It’s raining and humid here. So, my activity is limited to indoors, low to minor-moderate activity because I get tired a lot faster in this kind of weather. There’s no telling what my carrots look like in my garden. I only have one orange left on my dwarf orange tree. The wind blew the others off.

If you want to see the many pictures of Klondike’s Adventure in Germany, you can view them all here… you don’t need an account to view them. My sister really did show my rubber chicken a good time so far. His trip is coming to an end soon. I’ll be meeting my sister and her family when they fly through on their way home. Maybe I should make her some more cookies! Shh! It will be a secret!

Stay well and be safe. Lots of love to you all! *heart emoji!*

–Christine

Day Three — Tikosyn & the following month

Living On Oxygen for Life

By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*

Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.

Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.

Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!

My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!

Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!

Day Two… It continues.. Tikosyn!

Living On Oxygen for Life

There is one thing I want to bring up about the first day that I failed to mentioned in my earlier post about Day One. I’m still pretty upset about it. In fact, at the time, K and I were both very upset and flabbergasted about the whole incident. You see… when I have to stay in the hospital, I naturally bring along my bipap machine so that I can immediately have it available to use and I also bring all of my medicine. All of my medicine includes my specialty medicine which I know that hospitals, even though they are hospitals with lots and lots of drugs, may not have a supply of my specialty medicine. When I went to the Dallas hospital in 2014, that hospital didn’t have my Opsumit, that I was taking (no longer taking now!), in their pharmacy.

On the 26th of May, my first day of hospital stay, the hospital realized that they didn’t have Tracleer in their pharmacy. The nurse came to tell us in my room and I said that’s no problem because this has happened to me before in 2014 in a Dallas hospital. I brought my Tracleer with me in it’s bottle. The pharmacist can inspect it, slap a patient label on it and put it in their pharmacy locker to dispense out to me. The nurse went to call the pharmacy to see if that was ok to do. She came back and told me the hospital pharmacy said they couldn’t do that, saying something about a law? *shrug* I told the nurse that I can not be without this medicine. The pharmacy looked around for a small supply of Tracleer 62.5mg and found some all the way in Dallas that they were going to have brought to Fort Worth for me that night. I was so mad. I was mad because I had my medicine not but one foot from me and they wouldn’t allow me to offer it to take. I was mad because the hospital had someone in Dallas drive in pouring down rain and hail to bring to it to me to use. AND I was mad because I knew this medicine costs $8500 for a month supply and I didn’t want an exorbitant charge for Tracleer on my bill when I have mine to take that the insurance has already paid for when all they had to do is inspect mine and put a patient label on it. Sorry, but I’m still really upset about this.

Ok…Day Two.. It was much better than day one…although, I didn’t get to sleep until 2am because the last vital check was at midnight and I couldn’t fall asleep until 2am. I’m a night person naturally but I was getting in that zone where if I get too tired, I can’t fall asleep. That’s a very bad thing for me to have happen. I will start to feel physically sick. At 4am, it was Tikosyn time! Then nearly 5am, they came in to take vitals and shortly afterwards, the lab lady came in to take blood. Do you see a pattern here? Anytime I would nearly fall back asleep, I’d get woken back up and by 6am it was time for the EKG. By then, I just decided to stay awake and wake for breakfast and K to arrive. And don’t forget the diuretics to begin. They had all my medicine split apart and coming to me at different times. It was crazy because I was so use to taking morning meds when I woke up and then evening medicines right around 5 or 6pm.

I drew this picture and stuck it on the bathroom door. You see me on the island?

I drew this picture and stuck it on the bathroom door. You see me on the island?

K scooted into the hospital right before the doctor showed up and I had my list of questions ready. I think he was impressed because I had them listed on a small notebook I brought in case I needed it. (I highly recommend this!) My doctor noticed that I had my yarn out and had asked if I crocheted. I was impressed that he knew what crocheting was and told him that K calls it knitting. The doctor said crocheting and knitting aren’t the same.. I felt like we had a bonding moment there. haha! He looked around the room and noticed my sign on the bathroom door. I’m so goofy!

This was the worse meal I had at the hospital. Plus it had pepper on it.

This was the worse meal I had at the hospital. Plus it had pepper on it.

The food here was something else. I was stuck choosing from the Heart Healthy diet on a paper menu but I started to get smart by penciling in requests like a bagel and a chocolate chip cookie. The bagel, I got! The extra chocolate chip cookie, I did not. *pout* However, K did go down to the in-house Starbucks and bought us some goodies. For him, he bought a couple of blueberry muffins.. the kind with crumble topping… and for me, 2 chocolate chip cookies of which he snagged one. By the way, all the vending machines in the hospital only had healthy selections..even the soda or other beverages were diet. Gross! After lunch, I couldn’t believe I was able to get a 2 hour nap. It was AWESOME! Then K was like, let’s get your butt up and walk the hall. We did this the first day and he won’t let me get lazy just because we’re in the hospital because he knows that the more time I spend in that bed, the more my lungs lose function and I can have a set back. So, staying active was our main goal. As long as I wasn’t dizzy or woozy, I walked twice a day with him.. or my nurse tech when K had to go home for the night to take care of some errands for his mom and take care of our dog.

K use to sing and act out this song by the Beatles (A Day in a Life) for me.

K use to sing and act out this song by the Beatles (A Day in a Life) for me.

After hanging my motivational picture on the bathroom door, I wrote on the patient information board. It’s a dry-erase board in my room. I wrote my Day’s Goal as to “Be A Ray of Sunshine.” Cute, huh? [Picture shown on Day Three post] I wrote it because I was so cranky the previous day. Before K left for home and while I was in the bathroom, he wrote me a goodbye motivational message on the board that he knew I would know what it meant. I came out of the bathroom and saw that he was guarding it so that I couldn’t see what it was that he wrote. I was thinking that he wrote something to the nurses to get me to walk that evening. I mean, he kissed me goodnight and made me pinkie-swear to walk that night no matter what. I thought it was so cute that he would pinkie-swear with me that I just went ahead and pinkie-sweared. Well, when I read what he wrote on the board, I almost cried. I know that to you it’s just lyrics to a Beatles song but to me, it’s a happy memory that makes me laugh out loud. He’s so good at writing the perfect thing that will touch my heart and lift me up.

On the second day of my hospital stay, the labs came back with an even higher than MY normal of CO2 (or bicarbonate) level. The doctor was concerned, thinking that he should adjust my diuretics but I told him that I have normally high bicarb and my kidney does a good job at balancing my pH level. I told him that I would prefer that he would consult with my PH doctor before changing any diuretic she prescribed. Personally, I don’t like one doctor messing with another doctor’s orders. He did say that he was ok with that and he agreed with not changing her orders but he was going to watch it. That doctor is my Pulmonary Hypertension doctor and there are good reasons why I’m on the medication that I am on. I brought a 15 page history of my major health history (with test results) just in case something went wrong and they’d need more information. I even gave it to my nurse, which she copied, but I don’t think the doctor even looked at. I don’t know for sure but I did it because I’ve never been to that hospital before. I do what I can not to only protect myself but also to protect K in the event that if something happened during this stay in the hospital, he’ll know what to do to get information he needs about me to make the right decisions.

Apparently, at the starting dose of Tikosyn, which is the higher dose, my QT Interval was too long on the second day. The doctor had to make an adjustment to my dose that evening. I was now taking the lowest dose.. 125mcg twice a day. He told me that by the last (5th dose) and after the EKG, he would know if they could send me home with or without the medicine. Remember, anything under 500 is good.

Day One… It begins… Tikosyn!

Living On Oxygen for Life

Lemmon chicken with red potatoes from my garden.

Lemmon chicken with red potatoes from my garden.

On April 26, 2016. I woke up at about 4:30 am and I couldn’t fall back asleep. That’s pretty typical for me when I have something major happening that day. I grabbed my phone while in bed and I flipped through Pinterest to try to get myself sleepy again. Hey, it works sometimes! This time, though, I came across a recipe that I found myself mentally checking off all the ingredients it called for in comparison to what I have on hand. Well, what do you know… I had everything I needed to make this Lemon chicken with red potatoes from my garden.

I hopped out of bed, threw myself in and out of the shower and then got to cooking. When I was done, I went ahead and ate some. I know it was morning but who said you can’t have dinner for breakfast? If you can have breakfast for dinner, why not the other way around, right? *goofy grin* It was pretty good! At least now I had something ready for K to eat when he came home from the hospital. By cooking, it took my mind off of having to be in the hospital for the next 3 days.

The hospital finally called. You see, first the doctor’s staff said that the hospital will call when a bed is ready for me to come up to the hospital to be admitted. Then, the staff said that the hospital will only if there isn’t a bed available and if they didn’t call, for me to go up to the hospital to wait for a bed which worried me because I can’t just sit around at the hospital with my limited supply of oxygen. I’d have to get the hospital to supply me with their oxygen. I decided to call the hospital the day before to find out which method of calling was true. It turns out that the hospital calls me when they are ready for me and they did. However, when they called, they told me a room was held for me but there was an emergency and it was given to someone else. After shuffling patients around, they called me back with a bed ready. I got up to the hospital and into my room at about 1pm lugging my bipap, my 50ft tubing (theirs isn’t as long), clothes, all my medicine (you’ll hear much more about this later!), snacks, and yes, even my yarn! And that’s when the chaos began.

Selfie in the hospital to try Tikosyn.

Selfie in the hospital to try Tikosyn.

Once in the room, I was told to change into this high fashion gown made of pure, authenticated, designer cotton (tied in the back to obviously supply my back with the most opportunity of cold drafty air). K had to help me tie the back. I mean, who can tie those things?? Really!

Day One: blood draw & IV.

Day One: blood draw & IV.

Then, I was told I had to have an IV. Oh man.. I was so not happy but what could I do about it. I begged though. I’m not below begging when it comes to an IV, you see… I’m sensitive to adhesive and let me tell you… it itched and was painful the whole time (2 1/2 days!). And then there were the sticky electrodes that stay on. Ugh! Thankfully, I actually already had a lunch tray of food waiting for me. I couldn’t believe my luck! The food I made earlier in the morning for K, I ate as breakfast. So, I was pretty hungry by 1pm. Before I could eat, I had my blood pressure checked while sitting, lying down and standing up to get a baseline. It was all normal. Everything was going along swimmingly until I hear this pulsing dinging sound which kept going off loudly. Seriously, it was loud and sometimes it was continuously. It got to one point on the first day that I was fed up with hearing it and I asked my nurse, “What the heck is that noise??” She told me it was the nurse’s call button and my room was situated next to one of the two speakers of this bell. LUCKY, LUCKY ME! *rolling eyes*

At 4pm, I took my first dose of Tikosyn. I mentally braced for impact. I just didn’t know what to expect and neither did K. The doctor did come to see me later that evening. He kind of breezed through. I was unprepared to ask any questions.. so my mind went blank. Argh! I hate it when that happens. When I took my first dose of Tikosyn, they wait 2 hours and then they do an EKG. They do this for every dose of Tikosyn you take to see if you are at the right dose of Tikosyn. They want to know that your QT Intervals are under 500. Don’t ask me what that means because I just really don’t know. All I know is if it’s under 500, we’re doing good!

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I was SO cranky the first day. I knew K had decided to not stay all night at the hospital with me and I was ok with that. I was riddled with anxiety because everything was chaotic while, at home, everything is controlled. I know what to expect when I’m home. I take my medicine at MY usual time, I sleep in my own bed, my tv has more channels (hehe!) and people are not coming and going in and out of my house as they are at the hospital. Plus, I missed my dog, Rocco. I got out my notebook and drew him from a picture I have on my cellphone. I didn’t realize how much I would like the way it turned out. Drawing isn’t really my talent and drawing it in pen…well, I got lucky that it doesn’t look like a bunch of scribbly lines.

So much more to tell you but I leave that for Day Two! I don’t know how many of you like long blog posts. Therefore, I am breaking the whole even into separate day posts. I hope that’s ok. For those of you who don’t know what Tikosyn is… it’s an anti-arrhytmic medication for my heart. You can read more about it by clicking on the link. I don’t have Atrial Fibrillation. I have PSVT (paroxysmal supraventricular tachycardia), Ventricular tachycardia, Cardiomegaly, & Secondary Pulmonary Hypertension (Functional Class III)

The date is set….for Tikosyn

Living On Oxygen for Life

The date is confirmed for going to the hospital to try Tikosyn. Sometime during April 26, I enter the hospital and supposedly walk out on the 28th as a new and improved heart patient.

My last stay at the hospital was in 2014 when the PH medicine, Opsumit and my heart medicine, Cordarone (which is what I’m currently getting off from), clashed inside my body causing it to become hyperthyroid. That was no fun.

I documented that hospital stay on my blog and you can find it here: Life’s little emergencies. I’ll try to document this stay as well.

I hope everything goes well in that my body can tolerate Tikosyn without causing me breathing problems. I have a lot to take to the hospital but I’m going to narrow it down to my Bipap and mask, some comfy clothes & toiletries, my phone & iPad and hope I can use both in the hospital room to watch movies and communicate with the world. I’m even thinking about taking a small stash of yarn. you knew that was coming, right?

My heart is starting to act up. I stopped taking Cordarone on March 28 and before that, I was already tapering it down slowly over a 2 1/2 week period. Right now it skips and aches often. I hope it doesn’t feel any worse than this because I still have 13 days to go.

It’s time to go find my Wonder Woman underwear because I feel like I’m going to need a little bravery in the hospital. *fingers crossed*

Hey, just to let you know, I have a Need a Hug afghan ready to give away if you want it. It will go to the first person who emails me at goredrider@gmail.com and tells me their breathing problem diagnosis. It’s totally free to you! Lots of love to you all!!

Problem? Fix it!

Living On Oxygen for Life

Stress..the final frontier..for which no man (or woman!) wants to experience. Did that even make sense because I can’t tell.. I’m too stressed out. Over the last three weeks, I have literally hit the maximum overload point in the amount of stress my little body can handle before I start feeling physically sick. Chest pain, heart beat skipping, and downright depression hit pretty hard. But, let’s not go there.

I played phone tag a lot last week trying to find out when my doctor can schedule me in his itinerary for trying Tikosyn. He finally got back in town last week. I called him last Monday to let them know… “Hey, I’m still here waiting on an answer..” I had to leave a message. I really hate phone tag. So I sent an email too. You know, just in case. I finally get a call back from the doctor’s staff saying they’ve been discussing my case and they think the doctor will have an opening to be available to the hospital for the 3-day stay requirement during the last week of April. I told her that I’ll be out of medicine soon and I’m already splitting the pills in half. Her answer was that I’d have to be off the medicine completely for 2 to 3 weeks anyway. Personally, I think we’re cutting it a little too close for my comfort. Between now and then, the doctor has other out of town conferences to attend. What will happen while I’m off Cordarone and I have a rhythm problem and he’s out of town??

Meanwhile, K and I have decided to track down and purchase Cordarone from Turkey so that I’ll have something to fall back on if my body can’t tolerate Tikosyn. It hasn’t arrived yet but it’s been shipped. *fingers crossed * that it’s the same brand name Cordarone that I’m currently taking.

Right now, I’m not feeling any bad effects of being on just a half dose of Cordarone a day. My heart is skipping a little but I’m ok with that. As long as it doesn’t get worse or something doesn’t cause a lot of stress for me, we hope I’ll do ok.

I really wanted all this settled before the PH Conference in June because I’m super excited to be going with K. I’ll be hopefully giving away my favorite Need a Hug afghan that I just completed. It really is lovely!

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

I’m facing a decision that scares the heck out of me.

Living On Oxygen for Life

Let me set the scene for you, if you will allow me. *grin* You know I love a good story, yet this one is a hum-dinger! About a week ago, I put in a request for a refill of my heart medicine. It’s the heart medicine that helps with my Ventricular Arrhythmias and it’s called Cordarone. Now, mind you… I can take BRAND NAME only because the generic drug, Amiodarone and Pacerone, causes horrible headaches. I’ve tried a multitude of other heart medicines back in 1993 but they all affected my breathing causing severe shortness of breath.

So, I wondered why, when I got the email from my mail order pharmacy, which said that my Cordarone refill has been delayed. A few days later I called the pharmacy and asked wha’s up… you know? *raised eyebrow* This isn’t something I can go without. They told me that the medicine is no longer in stock and they didn’t have a date of when it would be arriving. That set off serious alarm bells in my head.

I went into my bathroom where my Cordarone bottle is and looked at the name of the manufacturer. Pfizer! Then I searched online to find their phone number to give them a jingle on my telephone. You know, just to ask them, wha’ up? I mean… seriously! I explained my situation about this is the only medicine my lungs can tolerate and I really need this drug. (Honestly, I was starting to freak out.) The people at Pfizer were super nice. They even put me on hold to find out what the problem was but they did NOT come back with good news. In fact, it was horrible news. Cordarone, they said, has been discontinued. But hey, there’s still the generic drug. UGH! I explained to them that I can NOT take that medicine.

After that call, I immediately called my doctor, who is a Cardiac Electrophysiology specialist, to tell them what happened and to beg them for an earliest doctor appointment available which was Monday. I went to the appointment but not only did I arrive to the wrong office (they have multiple offices!) but I had to beg them on the phone to allow me to still come in to see them instead of rescheduling. Can you imagine how stressed out I was? I had only 40 minutes to get to their office which was in a different city and there was major traffic but I made it and in one piece! Yay me!

Ok, so I’m in the doctor’s office talking it up with an older man about his mother needing oxygen. I guess when people see me they just naturally start talking with me or I’ll give them a friendly smile and they we’ll just start talking. I hate sitting in a quiet place waiting to be called. I naturally want to talk. *shrug*

I was able to talk with the Nurse Practitioner (because the doctor was out of country for the next week) for nearly an hour and it turns out that the only medicine that I could switch to is… That’s right… Tikosyn (I was offered that about 2 years ago and turned down but now I have no choice.) which requires a 3 day stay in a hospital to start it. To start this drug, I will have to stop Cordarone for 2 weeks prior to starting Tikosyn. If Tikosyn doesn’t work, I’m screwed. My other alternative is to try to buy Cordarone from Turkey through a Canadian pharmacy to fall back on in case Tikosyn doesn’t work. I’ve tried to buy it in the past from Canada, but they sent me Pacerone instead. I’m super, super stressed out… I need brand name. I have 28 Cordarone pills left. K took the news as well as expected. I’m going to call my doctor tomorrow and tell her I’m going to try Tikosyn.

K and I remember the experience I went through back in 1993 with my heart skipping constantly and it was not a good experience. We are going to try to make the 2 weeks without Cordarone as “low stress” as possible. Stress really effects my heart rhythm.

My only thought yesterday was … I really hope K brings home some ice cream for me. I could really use some. He did. He knew I needed it. I ate the whole pint last night. And it was delicious! Who knew Twix ice cream could taste so good??? Ok that’s my update.

Hey don’t forget to donate to my Need a Hug Project fund! I can’t wait to show you the afghan I’m nearly finished with. The donate button is on the right!

[March 2016]

We bring you a Medical Update…

Living On Oxygen for Life

IMG_3990 Oh the joys of hospital gowns. I never have been given a gown that actually fits. They’re sizes range from Large to Extra Large. Yeah, I asked. A lot of times I can just wrap the gown around my front, back and then to front again to tie it. However, the gown I got today was the kind that had short ties. So no wrap-around action for me and of course the opening had to be in front. What a fashion statement I made today!

Today’s appointment was with my cardiologist who I’ve seen for the past 20+ years. He’s AWESOME! He always asks me how I’m doing, what I’ve been up to, and if I’m still doing whatever it was that I was doing the last time I saw him which was a year ago. After all the pleasantries were out of the way, we started in with my questions. First I asked him what he has diagnosed my cardiac problems to be. His answer was, “Which one?” Haha! We laughed. Nothing with my health problems is ever easy or simple. In fact, my body is very complex. One organ’s problems affects another organ’s problems and etc.. It’s very frustrating because my body doesn’t want to do what doctors seem to think it should do. I think there’s a Murphy’s Law for that somewhere.

My Cardiologist told me that I have Supraventricular Arrythmias as well as Ventricular Arrythmias and when I first went to see him 20+ years ago, I had premature ventricular contractions really badly. Thus, the reason why I’m on Cordarone because it was the only medicine at the time that didn’t cripple my breathing ability. Now that we got that straightened out, I told him what the Cardiac Electrophysiologist (maybe I got that backwards) that my Cardiologist sent me to suggested Tikosyn for my heart problems. You see, I was looking for a replacement for Cordarone. Being on Cordarone is not a very safe thing for my body. It can lead to Thyroid problems as well as scarring of the lungs which is called Pulmonary Fibrosis. Tikosyn is used for both A-fib and my problems. However, after reading about Tikosyn, I felt the risks of taking Tikosyn for my actual cardiac problems were too high to make me comfortable to trying it. Beside, you have to stay in the hospital for 3 days to start Tikosyn. So, my Cardiologist and I are in agreement for me to stay on Cordarone, since I have yet to have any problems relating to Cordarone in 20 years.

Now wait a minute, you say. Don’t the PH doctors think this current thyroid problem that I currently have occurred because of Cordarone? Funny that you asked that because I brought this up with my Cardiologist. I explained what happened when I tried Opsumit for 3 months last year which ended with me being hospitalized for 3 days. I told him how I was diagnosed with Hyperthyroid and that the PH doctors were saying it was only because of me taking Cordarone. They wanted me off of it. I told my Cardiologist the status of my thyroid now that I’m slowly decreasing the thyroid medicine I’m taking. His thoughts are that it could’ve been Opsumit interacting with the Cordarone. It wasn’t technically Cordarone giving me thyroid problems, it could be that Opsumit in conjunction with Cordarone, triggered a thyroid problem in me. It actually makes sense to me!

According to the ECHO I did today, my heart looks good, pressures ok, blood flow is good. Then there is the not-so-good news. My aorta. For some mysterious reason, my aorta measured at 5.1cm. I don’t have high blood pressure. So who knows why this is occurring. Now I have to go get a CT Scan to more accurately measure my ascending aorta. My Cardiologist says that if it gets to 5.5cm, he will want me to go to the hospital where my PH doctors are so that I can get medical intervention. Sounds like some sort of surgery to me. *pout* He said that there are ways to not have to cut me open to put in a stint. I’m not sure if that’s makes me feel more reassured or not. Either way, it’s gonna hurt somehow. haha! I shouldn’t put the cart before the mule, so to speak. Why worry over it too much. I’ll wait to see what the CT Scan says first.

I’m just a little disgusted with not getting a clean bill of health with my heart today. It’s always hard for me when new things pop up unexpectedly with my health. It takes me a couple of days to accept the news and to begin to move forward again. I did show him a copy of my heart cath that I had last December. He thought it looked great! Hooray! Sometimes I feel like my PH doctors are all about doom and gloom. It’s nice to get a little optimism from my cardiologist!

I hope you enjoyed this Medical Update! *wink*

Stay in touch and be well. *HUGS*

Doctor appointment & medicine update!

Living On Oxygen for Life

I’ve been keeping myself busy with my fun garden which I’m growing in pots near the back door of my house. I’ve added more herbs and I’ve attempted strawberries but I think only one strawberry plant has survived. My raspberries tastes awesome! I’ve not given up hope yet! The day is so beautiful outside. So, my windows and back door are open until it starts heating up to the point I can no longer stand the heat. I’m sure it won’t be long. After all, I live in Texas. But all that aside, I wanted to tell you that yesterday I went to a new doctor. He’s a cardiac electrophysiologist. I sure hope I got his title right! His title takes up the whole left side of his doctor coat with the MD and PhD added to it.

The big reason I chose to go to this new doctor was because of the current cardiac medicine that I’m taking and have been taking for the past 20+ years. It’s called Cordarone (or amiodarone HCl). This medicine is used specifically for ventricular arrhythmias. It also has a pretty bad side effect of possible Pulmonary Fibrosis. I have been very lucky to not have developed this so far… but my ability to breathe has been getting worse over the years and really, I don’t want to be taking a medicine that could potentially be harming my lungs. That is why I went to see this doctor. I wanted to know if there were any new medications out that I could take for my arrhythmia problem.

Luckily for me, there is a new medicine out and of course, wouldn’t you know it… it’s a “Specialty” drug called Tikosyn. Not only that, to be able to start taking this medicine, I will have to stop taking my Cordarone for two weeks and then be admitted to the hospital for three days. It’s the only way the doctors allow patients to start this medicine. It’s because the patient has to be connected to an EKG to be monitored to determine the correct dose and to make sure the person’s body will tolerate the medication. The patient information packet that I was sent home with to study was geared towards people who are diagnosed with Atrial Fibrillation/Atrial Flutter (AF/AFL). That confused me because I have what I’ve been told is called Ventricular Tachycardia. Once I figured out that Tikosyn is a general purpose Arrhythmias drug, it only made me feel a tiny bit more comfortable with the possibility of this drug. It’s all a little scary to me. I haven’t decided on if I will do it but I’m leaning towards it. K is letting me decide this but I think we are both playing this off as a possible mini-vacation for him. LOL! Don’t get me wrong! He will be worried about me. He’s a great man.

Right now, I’m trying not to think about it other than for this post on my blog. I just thought you’d like to know what’s going on. I’m also still on the new PH medication called Opsumit (macitentan). I am doing a lot better on this go around. I had taken this medicine for the first time only for a week when I must have developed a sinus infection and had to stop the medicine for a whole week. I’m now restarted on Opsumit and am on the 5th day with no serious sinus problems and only a twinge of a bad headache occasionally. I think I will be okay on this stuff. If it helps my aorta artery and my breathing ability, then it will be worth it. Plus, there is the bonus of only needing to get lab work done once every three months now. That rocks!

I’m so looking forward to heading to Oklahoma to see my family. That means if I decide to try Tikosyn, it won’t be until sometime in June, after having all the fun I can have with my family. Besides, I don’t want to be off Cordarone while away from home and away from my doctors. To me, that’s risking a little too much. I’ll play it safe!

Don’t forget to follow my blog so you won’t miss anything! I haven’t forgotten the “Need a Hug” giveaway! I’m making the afghan and it will be finished very soon! I will get a preview picture up soon. Here are the pictures I took of my garden this morning. What do you think?

Herb garden in a pot with: chives, lemon thyme, spearmint, lemon balm & peppermint.

Herb garden in a pot with: chives, lemon thyme, spearmint, lemon balm & peppermint.

Newest herbs in my 5-in-1 dwarf apple tree pot: basil, cilantro, & dill.

Newest herbs in my 5-in-1 dwarf apple tree pot: basil, cilantro, & dill.

Tomato plant and jalapeño plant (can't wait to make salsa!)

Tomato plant and jalapeño plant (can’t wait to make salsa!)